The purpose of the study is to test a new survey for teenagers and young adults with a long-term condition about the healthcare they receive.

Who can take part?

You can take part if you are a young person with a long-term physical healthcare condition (e.g. epilepsy, diabetes, cancer, a heart/ lung/kidney/liver condition), who will have their care transferred to adult services within the next year, but currently receiving care in paediatric/children’s services.

What will happen if I take part?

We will go through a questionnaire with you which asks about the healthcare you receive. We will be testing the survey to see if it is relevant and clear, and will ask you to tell us if you find any problems with the survey. Your comments will help us to improve the questionnaire.

We can speak to you either over the phone (we will post a questionnaire to you and arrange for a suitable time to phone you), or if you live in Oxfordshire then this can be done face to face – either at our offices or a coffee shop. Your parent will need to be there to provide consent for you to take part.

Each session will last for approximately 30-40 minutes. You will receive a £20 ‘Love 2 Shop’ gift voucher for your time (we will post this to you after the phone call).

What do I do if I have any questions or want to take part?

If you would like more information, or would like to take part in the telephone study, please contact Tamara or Vivienne at the Picker Institute, asking about ‘Transition Survey Testing’ on 01865 208108 (9am-5pm Monday to Friday), or email Tamara.VanDoorn@PickerEurope.ac.uk

The project will be taking place throughout December 2014.

Do I have to take part?

No, participation in this research is voluntary. It is up to you whether or not to take part. If you decide to take part you are still free to withdraw at any time without giving a reason. If you pull out or decide not take part at all, this will not affect the care you or receive in any way.

Would my participation in this study be kept confidential?

Yes, completely. No information will be passed onto any NHS staff member. No identifying information (names, contact details) will be recorded anywhere or passed onto any healthcare staff, so nobody will know who takes part or who says what.

What will happen to the information I provide?

The survey that you complete will be destroyed once the research is complete. Your comments will be used to make improvements to the survey. The revised questionnaire will then be used by NHS organisations across the country to improve the care they provide to young people with a long-term health condition.

Who is organising the research?

The research is being organised by the Picker Institute Europe, an independent healthcare research charity based in Oxford, UK. For more information about the Picker Institute, please visit pickereurope.org